ispor eupati meeting - dr derick mitchell - november 2017

Download ISPOR Eupati meeting - Dr Derick Mitchell - November 2017

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  1. 1. Bringing patient education to the national + disease-specific level Derick Mitchell Chief Executive, IPPOSI
  2. 2. Why? Impact of EUPATI felt on multiple levels on medicines R&D in Europe Need training + education at the national level with material relevant to the national or regional context Stakeholders in medicines R&D (patient communities, academia, industry and public authorities) need to become more engaged and encouraged to support patient training initiatives within their country
  3. 3. IPPOSI? Who?IPPOSI A patient-led organisation that works with patients, government, industry, & science to put patients at the heart of health innovation Irish Platform for Patient Organisations, Science & Industry www.ipposi.ie @IPPOSI
  4. 4. Some of our resources INFORM ENGAGE EMPOWER
  5. 5. IPPOSI in EUPATI Provides the public-private partnership model for EUPATI Establishes IPPOSI-like EUPATI National Platforms across Europe
  6. 6. What is a EUPATI National Platform (ENP)? Patient-led, national network of volunteers Patients, academia, industry & other partners (government, regulatory, doctors, nurses, media) Public-Private-Partnership Model Executive Committee Advisory Committee Terms of Reference
  7. 7. EUPATI National Platforms Bringing all stakeholders together in countries Address educational needs of patients + lay public in R&D Disseminate EUPATI material + resources Raise public interest at national level Identify faculty, logistics, support for national level training and education
  8. 8. EUPATI Fellows our greatest asset! ENPs working with EUPATI Fellows & Trainees to share their knowledge with others and to put their training into practice!
  9. 9. 20142017 = Eighteen Interest from Brazil, Cyprus, Finland, Hungary, Israel, Russia, Serbia, Sweden and Turkey EUPATI Countries Legal Entity
  10. 10. ENP Network + Governance Derick Mitchell, IE Beatriz Silva-Lima, PT Thierry Escudier, FR Roald Nystad, NO Sue Pavitt, UK Rozalina Lapadatu, RO Gemma Killeen, IPPOSI 1st AGM, June 2017, Berlin
  11. 11. EUPATI Countries 2017 Regional Groups
  12. 12. Education / Training opportunities Leverage existing infrastructure, resources at national level Translating Toolbox www.eupati.eu Tailored training initiatives on specific areas of Medicines R&D e.g. Train the Trainer Replicating EUPATI-like training courses Both face-to-face and e-learning
  13. 13. EUPATI Mini-Course Starter Kits to run training days
  14. 14. EUPATI Mini-Course Starter Kits to run training days Core set of PPT slides in specific area of patient involvement, plus links into EUPATI Toolbox, Case Studies + Trainers Manual! Research design and Planning Research Priorities Research conduct and operations Dissemination Communication Post-approval Setting research priorities Protocol synopsis Protocol design Trial Steering Committee Information to participants Data Monitoring Committee Investigator meetings Regulatory Affairs Fundraising for research Practical Considerations Patient Information Informed Consent Ethics Review Study Reporting Health Technology Assessment Post-Study Communication
  15. 15. Train-the-Trainer Event - June 2017 Taking the toolbox to national and disease specific levels 44 EUPATI Fellows and ENP members Training with practical exercises How to use a starter kit
  16. 16. EUPATI-like courses at national level Pilot Irish Patient Education Programme 7 months ends on March 21st, 2018 3 x 6-week Modules Understanding Clinical Trials Regulatory, Medicines Safety, PV HTA Principles + Practices Irish Education Partners 2 Universities, 1 Regulator, 1 HTA Agency 1 LMS website: www.patientsinvolved.ie 21 Patient Students
  17. 17. Synergies with ISPOR, ISPOR Chapters? Pre-existing ISPOR Central ISPOR Italy Rome ISPOR Slovenia ISPOR Serbia Future? Existing or New EUPATI Countries? New Training + Education Initiatives? Communication + Collaboration? Identification of faculty, logistics? Ensuring neutrality of national content? Sustainability of national platform?
  18. 18. THANK YOU! dmitchell@ipposi.ie @DerickOMisteal